“ERDERA could become a model of how to align large-scale, cross-border research with real patient needs, so that the knowledge gained is translated into tangible benefits”
Erdera interviews Tomasz Grybek, patient representative and caregiver
“The notion that public-private collaboration is inherently problematic doesn’t align with current realities. Not only is it possible—it is necessary, beneficial, and more straightforward than many assume.”
“The National Mirror Group was the first time patients had been treated as equal partners in this kind of forum, and it immediately changed the conversation”
“If we can remove some of the barriers to accessing education—both visible and invisible—then we could support people with rare diseases in the right way”
“I hope ERDERA solidifies the mindset that no single group—be it clinicians, patients, researchers, public authorities, or private entities—can succeed alone”
Irene Norstedt: “The EU supports collaboration because no country alone, and no stakeholder alone, has the answer for such huge unmet needs in rare disease research”
